Our journey in the Autism Spectrum

Posts tagged ‘Coping’

…and then proceed to feel like a complete shtunk. This morning was one of those “sometimes”. I yelled at my son this morning. I mean really yelled. We were running behind schedule. I had slept in and was moving slow. Now I was frustrated that he wasn’t moving faster. And really Henry was doing quite well with the unexpected pace this morning. He took his meds before eating breakfast without a fuss, ate his breakfast in a timely manner and then went off to brush his teeth without being asked! This was awesome! And then it came time to get dressed for school.

“No TV after breakfast this morning, Henry. You need to get dressed. Bus will be here in about 15 minutes.”

A small cry of protest but he started to get out of his p.j.s, all the while reminding me that he did not want to go to school, he hated school, and it was stupid. And then with 10 minutes until the bus, he began pacing around in his underwear, talking to himself, scripting stories with his “friends”.

“Henry, no time for making up stories and playing. Focus on getting dressed please.”

More pacing, more scripting and noise making. He’s getting faster and louder. Still in his underwear, holding his jeans. These particular behaviors of his can drive me bonkers on a good day and after a several minutes of this I was getting irritated.

“Henry!” I said firmly getting down in front of him trying to get him to look at me. “Bus is going to be here any minute! You have GOT to get dressed! Let’s GO!”

Whining and fussing from Henry as he tries to pull on his jeans, still moving about and running whatever story continues to stream through his brain. He’s stuck on it.

“HENRY! LET’S GO! GET DRESSED!”

He looks up at me finally and starts complaining that his pants are too long and he can’t get them on and he doesn’t want to go to school and it’s stupid….

“HENRY, you can get your pants on! They’re the same ones you wore last week, for cryin’ out loud! NOW MOVE!” I am YELLING now.

Henry is still jumping around but instead of scripting he’s crying. He’s crying about not being able to get dressed, about how he wants to watch TV and school is stupid.

I start to feel bad about yelling at him. My first thought is, Oh great! Meltdown just before getting on thebus…this is going to be a mess and it’s all my fault! And yet I kept yelling…

“No TV Henry! If you hadn’t been goofing around and playing out your stories you would have had time for TV! You need to focus on getting dressed and ready for school!” I was still yelling as I pulled on his jeans, put his shirt on him, socks and then shoes. Once dressed he stops crying but he’s still teary.

“I’m not playing, Mom. It’s stuck in my ears, Mom. In my brain. I can’t make it stop.”

I am calming down. “Yes, you can Hen. You are very smart and you have a very strong brain. YOU can control what you think about.”

“But it’s hard sometimes, Mom.”

Finally I am no longer yelling, “I know, Dude. I know, but you have to keep trying okay? Sometimes it’s okay but sometimes you need to work on pulling it together. Okay?”

I can’t believe I am saying this to my 6-year-old on the Autism Spectrum…really? Mom-of-the-year!?!? Oy!

“Okay, Mom. I’m trying. Really trying!”

“Okay, I know. I know. It’s okay.” Feeling pretty awful now.

“Can I watch TV now?” he asks.

“Sure, but you only have about a minute.” I say.

“Okay, but one more thing, Mom, I have to tell you just one more thing.”

“Alright. What?”

Cue the kick in the gut…

“I’m sorry Mom. I’m really sorry.”

“Oh, dude. Thank you for saying that. You know what? I’m sorry! Mommy should not have yelled at you! That was wrong for me to do. Do you understand when I say I’m sorry? You know that I love you, right?”

“Yes.”

“Okay, good. I AM sorry! Are you okay? I want you to have a good day at school.”

“It’s okay, Mom. Now I want to watch Mickey.”

So after about 45 seconds of Mickey Mouse Clubhouse, we headed outside to wait for the bus. He seemed back to his normal self. I hope he is having a good day at school…if not, I know it will truly be all my fault.

I will feel bad about this all day…all week…Over the years I have really tried to curb my yelling. Since getting Henry’s diagnosis of PDD-NOS, I’ve gotten much better. ABA Parent Training was a big turning point for me. But this week…well, I’ve yelled a lot this week.

This morning was my fault. I know Henry needs time to transition between the activities of getting ready for school. I could see that he really was adapting to the faster pace. He was trying and succeeding! But when that pace kept up, especially for moving toward something that is not a “preferred activity”, he was reverting to his way of coping. I KNOW this…but sometimes I still yell. And I hate that.

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[ Ed. Note: I originally wrote and published this post for Cheairs at Redefining Typical in May of this year. With this summer’s vacation coming up, that hopefully will include a trip to the beach, it has me thinking about “the surf”. Since the original publishing I have found a couple of pictures from last year’s trip to the beach.]

My son was diagnosed with PDD-NOS and ADHD at the age of 4. This was a year and a half ago. I had suspected something was different about my little dude since he was about 2 years old, but that didn’t make hearing the words from a medical professional any easier. A part of me felt a moment of relief to finally have an explanation for all of the struggles we had been going through up to that time. A “yes!” moment.

Then suddenly I felt as if I couldn’t breathe. It was as if I had been yanked down under the water. It was real for me. Something physical. It was as if I was suspended in the water just below the surface. I could see but everything looked like I was peering through murky water. I could hear what the pediatrician was saying to me but he was muffled somehow. From that moment I associated the Autism Spectrum as fluid, always moving, always changing and all around me. A watery, living thing, this Spectrum.

I remember having to concentrate to breathe and struggling to try to grasp what the doctor was saying to me. My husband, Grant, was off literally chasing our son through the medical building because Henry just could not take being cooped up in the exam room any longer. So I was left there to try to take it all in and remember so I could share with Grant later. Our doctor was giving me literature on Autism and ADHD, a brochure for a local autism service, a business card for an agency for O.T., speech, and sensory integration therapy. I remember talking briefly about ADHD medications and do we medicate or not medicate? He wanted us to make an appointment in a month without Henry so we could discuss how he’s doing and to talk more in-depth about medication options or the option of no medications. He wanted to talk to us without distractions. He had experienced parents like me before. He knew I was probably barely retaining a fourth of what he was really saying. I realized even then that this was the doctor for us! We adore him!

Now a year and a half later, occupational therapy and sensory integration therapy, speech and language therapy, listening therapy, evaluations, more doctor appointments, IEP’s and ABA training; it’s all still around me. I am just off shore~drifting, suspended just beneath the surface. Some days the waters are clear and calm. The waves move me back and forth, up and down and sometimes I even get to the surface to catch my breath. But another giant wave will come that pushes me back further down or an undertow that pulls at me~ always still all around me. (Click here to read about The Undertow). Doubt and worry cloud the waters. How can I help my son to navigate these waters of the Spectrum when there are days I don’t even understand it. The meltdowns and anxiety for no apparent reason! The echolalia, scripting, jargoning! The need to control. absolutely. everything. around him. The deficits in his social and emotional areas! I WANT to understand. I TRY to understand. What is going on in my son’s head? It is a question that is with me every minute of every day. Perhaps only Neptune knows…

My son has a diagnosis ON the Autism Spectrum. But our entire family is immersed IN that Spectrum. It is all around us. The realization that we are never getting out can be overwhelming. Heart-breaking. But I think because my heart aches continually, it is in my nature to try an embrace it~ all of it. The good. The bad. And sometimes even the terribly ugly. To own it. To make this Spectrum ours. What choice do we have? Because the waves will continue to come…

“You can’t stop the waves but you can learn to surf.” ~ Jon Kabat-Zinn

The continual crash of the waves can be too much some days. On these days I am physically tired from it all. But again, what choice do I have but to reach for my board and try to learn to surf those waves of the Spectrum? To own them. To make them ours. Surfs up, my little dude!

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As I begin to type this, it is just minutes before 6:00am CST. I have now been up since around 3:30am. Henry woke up with a dream. He didn’t say it was a bad dream, he just wanted me to lay with him for while. Hard to resist when he just wants some quiet snuggle time. At 4am I crawled back into my own bed but could not get back to sleep.

My mind was racing all over the place. And then suddenly my stomach seemed to leap up into my throat. I forgot to pay our Discover bill! Damn! I glanced over at my clock which was glaring red. 4:32am. Double damn! My alarm was set to go off in about 15 minutes anyway so I hauled myself out of bed and down to my office cursing myself all the way. I quick threw some money at the credit card bill via online bill pay as if that would make it all go away. I was dreading having to tell Grant that our bill was going to be late. He probably wouldn’t be up for at least another hour. I spent the next hour or so feverishly working to clean up my office space, get bills in order, and organize our donation lists (with pictures) for itemization for future income tax returns. As if this would help erase or make up for the late bill. In case you are not up to speed on the whole spring cleaning/donation fiasco you can catch up here and here.

Grant knows I haven’t been coping well. I can’t seem to get anything done or keep track of anything. I am overwhelmed by the little things so then too the bigger things are doubly overwhelming. I am forgetting things. Losing things. Often. Last night Grant watched me tear through one of my cabinets looking for a lid to a container all the while ranting to myself about how “the lids always disappear!” and “where the heck can they possibly go? Who uses a lid without the container? What would you use just the lid for?” I was feeling a bit crazed and this missing lid was about to push me over the edge. Just as I was about to search for another container with its lid, I saw the missing lid sitting on the counter, where I had put it while I was filling its partner. Oh.

Grant: “Babe, are you okay?”

This was just one of my many questionable “episodes” as of late.

Me: “No. Not really. No.”

He looked as if he was trying to absorb and process my response and just ended up looking at me helplessly.

I remember an e-mail I received some months back from my friend, *Hermione*, in response to one of my blog posts. I laughed at her perception the first time I read it and certainly it gives me a good chuckle right now. Hermione has a daughter *Rose* who is just 6 months older than my oldest daughter, Molly. We have commiserated over the years through the pre-tween, tween, and now teen years.

From Hermione: I have been reading your blog…. You are quite articulate. You describe so well the mixed emotions…. Happy to have a diagnosis that will give Henry the assistance he requires but all the scary negative emotions of the diagnosis, which is still hard to hear, even though you said you knew it was coming…

Anyway, you sound amazingly skilled at handling all this. *Ron* and I are barely able to cope with a “normal” teen…. Thinking of you and Grant and Henry and sending positive energy your way.

Articulate? Amazingly skilled? Are you kidding me? Upon my first reading her e-mail, I was immediately questioning that she even was reading MY blog!

She goes on to tell me what she’s been up too; working, reading, quilting (or rather, her not quilting), and how she and Ron are constantly at odds with Rose, how Rose wants her room painted black and Hermione’s attempts to make is less black by trying to compromise.

“…. So although she may view it as “goth/modern”, I suspect everyone else will view it as old-fashioned and Amish.”

Quick side note: We too have compromised on the black in Molly’s bedroom. She got new black curtains and some new black decor to accent her already purple and lavender walls and bedding.

Hermione tells me of her and Ron’s trials and trauma and drama with Rose and it all sounds familiar…except in our case, Molly wants to do everything and be brilliant at it with no effort or practice and then complains about it.

“[Rose] wants to quit piano…. At which point she will be doing nothing. Nothing at all, except texting and watching Anime and doing homework. No sports, no interests, no extracurriculars, no hobbies, nothing at all. Except homework and being nasty to her parents. Ron comes home and goes into our room and hides. Comes out for dinner and goes back in again. And then Rose is crushed he doesn’t pay attention, but when he does, she is so often nasty…. He over-reacts and she needs to be kinder. It is all driving me crazy. Both of them. And then the dog got sick….. but nothing to complain about, really. How you do it is beyond me and you have my highest regard….Hermione.

Did I mention that the *Weasleys* are big Harry Potter fans? Anyway, here was my response back:

Here is my secret to coping (if you can even call it that): Alcohol, Hermione. Alcohol. That and making friends with Zoloft.

Keep in mind that sounding skilled and actually having the skills are very, very different things! We get by. We laugh, albeit sometimes quite maniacally, to avoid crying. Molly is at odds with Grant constantly. The ONLY reason she and I are not at the same odds quite as often is I just tune it out. When I just can’t take one more snide remark or sneer from her I just shut down and leave the room. I try my best to avoid any kind of raised voice at all. This is not my strong suit but practice is forcing me to get better at it.

We also have been trying to apply ABA strategies that we learned at TouchPoint for Henry to all three kids. That is becoming easier too. It’s not usually very fun but at least the verbage is getting easier for us. Yelling just fuels Molly’s fire. I now try to state what is expected of her and remind her of whatever the consequences may be and then I walk away. She has been known to follow me around the house for HOURS whining and complaining, yelling, screaming, slamming things, getting in my face….and I just keep walking away, avoiding eye contact, every so often repeating the expectations and the potential consequences. I pretend to read or surf the internet. I pretend I am playing a part and there is an important critic in the audience so I’d better make this performance good! (I have a friend who does the same to win an Oscar~ for myself, I just want to get out of summer stock). I don’t let Molly see me cry.

I have not read anything in forever. I have at least 5-6 books sitting on the shelf waiting to be read. My escapes right now are Facebook and blogging and Black Phoenix Alchemy Lab scents. I am pretty sure that I am going through a midlife crisis and my alter-ego is trying to keep me busy. She has her own Facebook page. She wears glasses. She is supposed to be working on writing a book. Lots of half-ideas….nothing formulated enough to actually write down. So, we blog. Everything is a potential blog post. Nothing is sacred. hmmmmm……yep, don’t be surprised if you see this reconstituted as a blog post at some point in the future.

I don’t see that as coping at all. I see that as a crazed, under medicated manic/depressive hanging on by a thread and shutting down and escaping whenever possible. And for the record, my oldest is not always that bad all the time. She is an awesome kid….but you know, she is still a typical, hormonal 13-year-old! So, I concluded with:

So, see, I really am not handling this teen stuff or autism stuff very well at all. I suspect really most parents don’t, Hermione. We just do what we have to do to survive it. We will survive it! Hang in there! You know where I live and how to get in touch with me if you need to! I am out here in the muck too! ~Karen

I do realize that I have a pretty sweet gig here and certainly there are MANY parents out there going through much worse, much rougher times. I get that and I am ever so thankful for my family, my job and our life. But there are moments, lots of them lately, where I just can’t seem to get a handle on things…so much feels out of my control. I feel lost. My husband always knows how to “find” me and anchor me. But he is tired too. I ask so much of him.

So, flash forward to now…this afternoon… I’m tired, anxious, and have LOADS of things I need to do. And I am still not getting any one thing done. The little ones are “playing” by destroying the basement family room. Laundry did get started but just that, started. At some point I am going to have to do some work that I actually get paid for… I guess I will try to squeeze that in sometime after I hard-boil about 2 dozen eggs for the family fun night of egg dying and decorating.

Oh, yeah, and that late Discover Card bill? I was so freaked out about it and worried we would lose our low APR, and Grant was too, that he called the company. Turns out I had paid that bill early sometime late last month. So, we weren’t late at all…

Oh yeah, and now I guess I CAN mark one thing off my list as complete! Blog post. Done! Now, where did I leave that laundry basket…?